Hi, I've been posting on the IBD board for months as that's what I was told I had. Now the consultant seems unsure. Basically, after months of tests I have:-
Inflammation in my stool sample
lactose intolerant
glucose and fructose intolerant
small intestinal bacterial overgrowth
joint pain
random bouts of vomiting
chronic pain in the right lower quadrant
normal BM's x 5 per day or diarrhea up to 15x per day
weight now stable at 8st, lowest weight 6.12
I've has a colonoscopy which was clear, a barium meal, clear and white cell scan also clear.
I have a VERY restricted diet. No fruit, limited vegetables and usually eat gluten free pasta/rice or plain sandwiches. I'm missing out whole food groups to control my symptoms. For the last 6 days I've had really bad nausea when eating and severe pain in my right side. The pain isn't relieved by a BM, if anything it increases the pain.
Try taking symprove . Dairy set off my ibs but could eat anything whilst taking it and no Ibs symptoms. Has anyone said you might have Cfs (chronic fatigue syndrome) used to be known as m.e. Or fibromyalgia? Ibs can be one of the symptoms of them.
No neither my fatigue gets put down to lack of food basically. It's a joke. The whole IBS thing is a joke. After 20yrs u would think that they would have found a better way to control it by now. So many people suffer! I'm also fat intolerant aswell, forgot that one. Any food is a struggle and it just becomes so mundane. I eat simply to keep up my weight, I have no appetite and never feel hungry. I can eat a light meal of rice and alpro desert at 5pm one evening and eat nothing until the next evening and not even feel hungry
Really try symprove , it's well worth the money . I would really push to see if you have Cfs. I only got diagnosed after a physio told me to go to drs as she suspected it was. Dr then took it seriously and surprise surprise it was. I have also developed fibromyalgia now as well. I take buscopan but can't always keep it down when I am having a bad attack
Saying that I haven't had a bad attack even after I stopped taking symprove. I now only take it if I've been given antibiotics.
Everyone who has them can have a mixture of symptoms. The main one of cfs is fatigue you can also get pain, brain fog and loads more symptoms. The big difference with fibromyalgia is the touch pain. If you scratch an itch you can be left with the pain for hrs. There are 18 points on the body that you need so many to hurt to pressure. You can also have a lower immune system and tons of other stuff. Sorry my brain doesn't work well this late in the day. Look them up on the Internet and see what symptoms they are and you can see what relates to you.
very sorry for you your symptoms sound bad, with help from your dr, gradually reintroduce certain foods, like chicken maybe eggs, you will need some protein, ask him if you can take certain vitamins and minerals in tablet form, you will need them to keep healthy. Otherwise its trail and error, keep seeing your dr.
Thanks Debs, I've done the reintroduction of foods before, it always triggers the vomiting attacks and I end up malnourished and vitamin deficient. It's better for me to eat the few foods I can and get on with it. I have been referred to a dietician again but it's a 6 mth wait! I can take a multi vit, minus iron as this gives me v bad cramps. I do this as I was B12 deficient and had low foliate but that has now been resolved (for now) as I had regular injections. The consultant cannot understand how I can have all these problems yet no signs of bowel damage! Neither can I lol
Morning Susan; just letting you know that CFS is a Part of/overlaps with Fibro in some patients....it can be a condition on it's own.. and Fibro is a condition of it's own....and yes IBS is a symptom of Fibro....but the R) groin pain is something that I'd look further into .....hoping they have scanned this Particular area?.....Bron
Thanks. I have had Cfs with ibs for over 10 yrs and then developed fibro 2 yrs ago. The cfs pain and fibro pain are different. The fibro pain is more unbearable. Sometimes even my son hugging me hurts. I was diagnosed with the ibs first and then it took another 3 yrs to get cfs diagnosed . The Dr who diagnosed ibs didn't really know anything about cfs. Each specialist tends to look at their thing and nothing else. They need to start looking at the body as a whole .
Hi susand; yes, I think you'll find most of us agree re the Fibro being harder to handle. It also takes "quite" a bit of trial and error to find the right meds/treatment to help us to cope, and each body area that becomes affected, needs different treatment. Do you want to talk about what treatment/meds you have found that works? However, as in my earlier comment, what do you feel is the problem with your R) groin? have you had scans? and is it constant, or periodical and How does it feel..(describe it)? We all have sooooo many different body parts that give us "the run-around", and after a while, we find it hard to differentiate what is Fibro, or something else......do you think it has something to do with ovaries?......the more we read re Fibro, and find out that many have had pre-existing conditions that have been noted in others, and now are saying that some of these conditions are pre-cursers to Fibro...as are certain personalities..........it is a never=ending research.....you take care of You for awhile, and Try not to have any more stressors, as I have found that with each Major stressor in my life, another part of my body goes. There is also a Lot of info going around, that I think is quite appropriate for the CFS/ME, and that is that our Thyroids are causing us the fatigue.....I have trialled the Thyroxin, and have found that, Yes, my energy levels have picked up.....then have the rebound of trying to do too much, and the Fibro says "NO".....can't win....but do know that with the right meds/treatments, I can usually cope........Bron
The best thing for fibro pain is excercise/movement. The only thing is that then makes me/cfs worse lol! I take amitriptylene and pregabalin in the evening which helps me get into a deep sleep and helps with the nerve pain. I try and keep off my pain meds until it gets to a stage where I can't cope with it. That way when I do really need pain meds they work. I try other techniques to stop me thinking about the pain such as crocheting and knitting. I have had my thyroids checked and they are fine. I'm not the one with groin issue. I do however take the depo contraceptive injection which stops your time of the month and levels your hormones. This has helped me with the migraines and ibs pain. I also take symprove which helps with the ibs. I tried a vibration plate as this is meant to help with both me/cfs & fibro but I have knee issues and I ended up where I couldn't walk with the pain. I think my fatigue is worse because I have a low blood pressure. it's still in the normal range but at the very bottom. This apparently means that the kidneys don't get enough blood supply to clear all the toxins out and this means it causes your body fatigue. I have had to remove all stress from my life that I can. I used to work but I ended up catching every infection going and after catching a lung infection I ended up in resus in a&e. My windwipe was nearly completley shut. Luckily they got it under control but I have to be very careful. Any stress can lower my immune system and i can get extremly ill very quickly. Luckily I find on a day to day basis I am learning to live with my conditions. I have put it as a new chapter in my life and don't look back to the old me. This is who I am today and each day I just do what I can when I can.
Morning susand; just got back to reading your reply, and you do certainly seem to have it all in perspective.....better than me, for there are still the occassions that I "try" to remember the person I used to be....but it all seems soo long ago, hey? and yes, I think we do learn to accept and live each day as it comes (as I told another lady who has just recently been diagnosed....it's like a grieving process....each day, we move through the process)......I am ok, if I don't have any extra jobs/outings to have to do....then I feel pushed to my limits, and need a couple of days/a week to get back on track.
It's interesting re your low blood pressure and it's affect on your kidneys/renal glands and how you feel that is affecting your energy levels....no-one else has mentioned that, but I can see how it would....and as for the Depo injection, that is probably a Very good idea, as many info sites have mentioned how some are affected by Hormone Levels...when you mentioned "toxins", this is taking me back to my Continual question of "why is this Fibro/CFS so prevalent in today's world....is it to do with what we are eating/doing....my parents and theirs before them, had lots of extra stressor/or same as ours....but don't remember them having Fibro.....as it's only something new on the medical field, there has to be something that is causing the major widespread of this, in all countries...if we could find the causative factor, we maybe able to help ourselves by ridding ourselves of it/at least stop more from succumbing??? This is where I am looking with reading all the info/inputs, as to what we used to do/work/diets/stressors....when I read re the Herpes Virus being a causative factor, it made sense to me as had a very bad dose in my teens (of chickenpox), and have been exposed to it many times within my Paediatric/ED nursing years, and then of my children....even to the youngest who was able to be vaccinated, but still got a bad dose and then 2 other minor doses....this all made sense for the ME, but as to the Fibro....havn't found a connective issue for that.....have you got any ideas? rambling now..so will close.........Bron
Bron, Thanks for your reply. My Cfs is from a respiratory infection. When I was pregnant with my son I reacted badly to his hormones. Your immune system reduces so your body doesn't react to the baby but mine went even further. During the pregnancy I caught bronchitis and pleurisy. It can also be genetic, they think a gene goes faulty. My mum had m.e. 10 yrs before me . As for fibro I have developed that & so do other people after having cfs longterm . It sounds like when your body is reacting to something your body then starts up with fibro. I personally think that it's something going on in the brain. Crochet is what saved me. I can make things without using too much energy and I feel worthwhile . I am also in some crochet groups online and you do get a buzz when people like what you have made. I am the same with days I do too much. I did too much yesterday and have been awake with the pain since 4am. I forgive myself those days and just plan rest time for them. It's a difficult disease to get diagnosed and a harder one to live with .
Yes sasand; i guess I was luckier than most when it came to diagnoses....I had worked with my Rhuemy for about 4 years in the ED, before she studied her Rhuematology.....so she Knew straight away/believed me when I went/asked her what she thought maybe wrong....hence I have been able to get the appropriate treatments that suit me and allow me to cope Most of the time.....it's just the Usual of what many people ask re all conditions....and with older/more known conditions, we know the treatments/causes.....my Rhuemy agrees that major stressors (a very stressful life is the causative for Fibro)...and yes, I agree re the decreased immune system, as I felt my lethargy came on After my Fibro (not the other way around) after an episode of what specialists said was Glandular Fever in 2005....but the Fibro started back in 1994, after nursing my dad, and then more body parts went after each other stressor (not just to the Fibro but to the Arthritic joints as well)....it just seems that maybe we of today's world cannot handle stress the way our parents did???? (I mean my Dad fought in New Guinea against the Japanese, but didn't succumb to Fibro......as did not others of that era....but now we have PTSD etc.....???).........my brain asking questions.....Bron